A Blog About a Bloke-Living with WHS

Just a quick update to let everyone know that Ryley is much better. He has gone back to school and they reported today he seems back to his old self, which is great to hear! Fingers crossed we can all stay well for a while now!

Someday it will get easier. There will be no more late night dashes to Emergency with Ryley in unbearable pain. There will be no working with doctors to figure out that pain and what is causing it. There will be no more nights of no sleep. There will be no more days with a miserable, groaning child who can't talk or even point to where the pain is. There will be no more little man just putting up with it. I hope that day doesn't come soon. Ryley has been sick again with what we think (by we, I mean us and the doctor) is some kind of rotavirus gastro bug. Very nasty and it has really knocked him around. He is still not himself and has to miss school again, but he is on the mend which is a huge relief. Having a child with a disability means you learn to just accept the things you can't change. Your child is more susceptible to any illnesses going around; that most people will never understand what it means to see your child in unexplicable pain and not be able to help. You le

I love to read. Both my boys love to read. In fact I caught Braeden sitting very quietly on the couch the other morning reading Spot Goes to the Farm. At the moment, I am craving being able to sit down and read a good book. Something other than a Spot book, or a Mem Fox book or something with cars and trucks. It has been so long since I have managed to find the time to emerse myself in some Australian History, or the true story of someone who has had an amazing life. I miss it. I truly miss that feeling of not being able to put something down, of not being able to wait until bedtime to pick up where I left off. I guess someday I will manage to find the time again. Until then, I guess it is tales of The Magic Hat, Where is the Green Sheep and Wombat Stew, with some Spot Adventures thrown in...and every now and then, when I am lucky and Ryley forgets about his schedule of books he will read, we get to read Bob Has New Boots... I should be grateful I guess that the only time both my boys

"and when I take them into town I have to get up early, 'cos they never go the way I want, so I need some one to help me..I just give a whistle, and I call for Bob the Kelpie.." Anyone else remember the song that Don Spencer sang? Or is it just me?! They boys have had a most excellent weekend and especially enjoyed being out at Nanna and Poppa's out at Amphi. We helped bring a mob of sheep in from the paddocks to be locked up to be shawn the next day and both the boys took on the role of helpers. Ryley jumped on the motorbike with Dad and was in his element as they rode over the hills. Braeden decided to just chase them. Both the kids loved the lambs and each had turns patting them and trying to catch them. I have only put a few photos on here. I will put more on my Facebook page. Being outside sure does make for tired kids!!

Most days I am amazed by my children and the things that they have achieved during that day. Every night before they go to bed, I tell them how proud I am of them and how great it was that they did xyz that day. Then I tell them that I love them and we have lots of kisses and cuddles and the boys always 'headbutt' each other to say goodnight. After school in the afternoon we have slipped into the routine of afternoon tea until 4pm, then playtime until 5pm. Tonight we were practising our ball skills seeing as Ryley chose to play with the ball (it is one of his MOST favourite things to do!). Braeden happily was putting a ball in a basketball hoop and Ryley and I played catch. Only Ryley was actually catching the ball ! This has been something we have been practising for YEARS! You can imagine the joy in my heart to see him able to do something that so many people take for granted. So often I hear people saying how they would like to appreciate the small things in life. Not many

Ryley finally fits into a school uniform top! It is his 3rd year at school and the top is size 4 and still too big...but he can get away with it! Braeden loves to draw and has even discovered that drawing on your face is just as much fun...and I know what Uncle Bede will be thinking when he sees the pictures...!

Finally. School holidays have finished. Ryley has gone back to school. Much to his delight. This morning he literally ran to the bus. I have never seen him go so fast! It is great to see. He gets so bored. These winter school holidays are the worst! It is usually too cold to go outside and both Ryley and Braeden go stir crazy if they can't go outside. I don't blame them. I am the same. So hopefully we are all back to normal routines now. We just have to start getting everything organised for our road trip to QLD. Countdown is on!

Today went like this: 5:30am- Dad up and gone to work. Mum up, finished breastfeeding (for the 4th time) and into bed with Ryley to put him back to sleep. 6:00am- Ryley up. Having seizure after seizure. He can't stop. Braeden up. Heard Ryley, realised Mum wasn't nearby, he bounces on the bed. 6:15am- Medicine time. Hope that settles the seizures. Why are they so bad today? 6:30am- Make Braeden some toast. Organise Ryley's PEG feed. 6:50am- After rearranging the furniture (Ryley hates it if we all aren't sitting the way we are meant to be) start PEG feed. 7:30am- Finish PEG feed. Switch off news. Start Playschool DVD. Head for shower with Braeden following. 7:45am- Out of shower. Braeden has put my towel in the bath on top of the wet facewashers. Towel now wet. Me freezing. Braeden slamming door because Ryley wants to come in. I open the door and make a dash for the bedroom and a dry towel. 7:50am- Braeden and Ryley now in bedroom. Playschool tunes still going-

Ryley is frustrated at the moment. He is bored. He is expressing his frustration by pushing the limits, and trying to get at his mum as much as possible. Pretty typical for a 7 and 1/2 year old on school holidays I would think?! The difference is, that he can't actually tell me what he is thinking in words . So he tells me in actions, stinky seizures, and his 'whiney' noises. Ryley is absolutely fantastic at handing leading and putting my hand on what he wants, and he also occasionally uses his picture cards. He also understands a multitude of makaton signs and can even do some basic signs! The best way to get Mum's attention? Seizures. For those that don't live with a child who has seizures, it is probably impossible to even begin to imagine how someone could use seizures to get attention. But believe me, it is most definately possible. Ryley has myoclonic seizures. These are very brief jerking movements. Mostly it is his whole body that jerks, and they generally

After searching and wondering for the past few years, I have finally found Ryley's old blog in the web archives. So I am going to spend some time (hopefully!) linking it in to this one if I can. At the very least I can now print it all out anyway! I am so relieved. I thought it was gone forever!